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With any luck I will be finding a diagnosis in the near future. I have some sort of autoimmune thing going on, but not sure what. I hate, hate, hate having to spend time trying to figure this out but my pain compels me to do something. Saw a rheumatologist about a year and a half ago. My body was calm at the time so things were left unidentified. I had assumed RA but was sero negative for RF at the time. Still might be RA but there have been some changes in the symptoms.

It was very frustrating trying to explain my pains to the regular doc, and a spine guy (I do have spine issues that are more run of the mill degeneration). I'm pretty sure they think I am looking for pain meds. I'm not, but wouldn't turn them away because there are days in which they could have been very helpful just in keeping me functioning.

Anyway, I have joint pain and sometimes I have joint and muscle pain all over my body and I wonder if my body is overreacting to physical activity. Many days I feel icky, like I'm going to come down with something, but the something never happens. I feel this more later in the day. A few days ago, I had a serious flare up of this total pain situation and really just wanted to just sit in a chair all day. Bites, but hey, I don't have to tell any of you that.

I also have Hashimoto's and type 2 diabetes, both for many years.

itsmedammit 8 Nov 30
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I have one of those unspecified autoimmune disorders that acts like RA but has its own unique features. I have a great rheumatologist and the way she explained it is "We only have names for a few hundred of these things. The important thing isn't to give your specific autoimmune disease a name, what's important is to figure out how to treat it."
I've been through quite a journey since then. It took a few years to figure out what combination of treatments works best for my unique condition. It wasn't easy but the alternative is to let my immune system continue to painfully attack my joints and internal organs. I'm doing far better now than I was before getting treatment. I have fewer flareups and far less pain. Try asking your doctor for a referral to a rheumatologist. I really had to fight with my spine doc for my referral and I am very grateful I did. I hope you find a good doctor and some answers soon.

Sweeteej Level 4 Feb 1, 2019

I have been to a rheumatologist but it was not a fruitful experience. This is the same rheumy who was leaning towards RA. This time she, and her PA just wanted to run a bunch of tests and xrays. I suspect they make money on every test they order. They are part of a huge outfit down here that I won't be going back to if I can avoid it. Anyway, things have been pretty good now. I have been on celebrex that my primary prescribed and have been more careful with my diet. I agree, the bottom line is to get treatment rather than a name, but the scientist in me wants to know, dammitt. 🙂

Glad things are going well for you. It is good to hear success.

0

Have them test you for Chronic Lyme if possible.

I need to be tested myself in fact. Not that there is any stellar treatment for it.

There's so many possible diagnosis for such things. And nothing really concrete to tackle that I know of. Hang in there. And make them listen to you about your quality of life.

RavenCT Level 9 Dec 1, 2018

Thanks for the reminder! It had crossed my mind but I forgot to ask the doc to test.

1

I can relate to a lot of what you are saying. I was diagnosed with Lupus in 2000 and I have been pretty much in remission for about the past ten years. However, I don't have much joint pain now but, it is all muscular pain. (as most of us with chronic muscular pain, I got the additional diagnosis of Fibromyalgia) When I am asked what it feels like, the only way I can describe it is constantly feeling like I have just had an intense full body workout without the working out. Then people (who don't have an autoimmune disorder) say, 'I bet if you exercise, you would feel better'. Then when I actually attempt to workout, the pain is even worse. Then I hear, 'It will go away once you get into a routine'. OMG! It is so aggravating! They have no clue!

About two years ago my doctor tells me that I probably don't have Lupus but that I have Mixed Connective Tissue Disease. When I asked what it was, she basically said that it means I've got something autoimmune but, they can't figure out what type. When I was diagnosed, I was living in California and loved my Rheumatologist. I moved to New Mexico about ten years ago and I have yet to find a good rheumatologist where I live. Very minimal selection in the area and not even one in my town. My GP has been treating me but, she has a lot of knowledge of autoimmune disorders so, I have to make due. I also have Epstein-Barr virus, hypothryoid, Fibromyalgia and depression and anxiety.

Do you remember the last time you ever felt "normal"? I sure don't. I hope they figure out what is going on with you.

Aushra Level 6 Dec 1, 2018

Actually had a couple of days that felt normalish a few months ago. It was quite a revelation to realize how far my body has drifted from normal. I'm suspecting a diagnosis of Lupus or Mixed Connective Tissue Disease, but I find I have less and less faith in the doctors and medicine in general. The autoimmune stuff is extra difficult with its vagueness, vagaries and overlaps. I'd like to get something figured out out but am not looking forward to the process.

Yup, I've gotten the whole, you just need to get back in shape or into a routine or whatever. Unless they've been there, others don't understand. I don't think the docs really get it either. I just do my best to avoid talking about it. It is nice to know others who DO get it.

@itsmedammit @Aushra I remember being in shape when this all started! lol

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